Meet Our Warriors!
Our warriors are the reason why we fight for a miracle. Please take the time to meet them & review the steps if you want to be featured.
Madelyn was diagnosed just shy of her second birthday with ETMR. Maddy was such a bright, silly, happy little girl. She loved kitties, pacies, blankies, her brother and so much more! Maddy ended up contracting a fungal infection that made us have to pause her treatment, which led to the cancer coming back and in turn took her beautiful body. Her soul remains with us!!!
Raiden Irvin was a funny, rambunctious, and loving toddler. He was born premature and arrived three months early, but you would never know by looking at him.
When Raiden was two, his parents noticed a gait issue and a change in one of his eyes. After over 3 doctor visits and no answers, an MRI showed a mass in Raiden's brain stem.
It was later discovered that the tumor was stage IV cancer known as ETMR. Only 5% of the tumor was left after a brain surgery, but due to ETMR's aggressive nature, it grew back. Raiden endured multiple surgeries, aggressive chemotherapy, and proton radiation.
Raiden was a lover of Dragon Ball Z, Marvel, the beach, and his family.
Raiden has one older brother named Cameron.
He is forever 4.
Charley was diagnosed with stage 3 neuroblastoma on Christmas Day 2020. The first three months of treatment failed, her tumor continued to grow.
She was immediately put into high risk treatment, and her prognosis dropped from 90% to 50%. She had a case of NB that her oncologist had never seen before. Rare and very aggressive.
She lived most of her life in the hospital, set back after set back. Months after diagnosis, she was finally doing amazing, and went in for tumor resection. The surgery was not successful, but our hopes were still high. She continued to thrive with all odds against her. Two months later, treatment had completely destroyed her bone marrow, unknowingly to any of us. She caught an infection which ultimately became sepsis. Because her BM had been destroyed, our baby girl could not recover.
We lost her in September.
She fought everyday with her big gummy smile, and she changed thousands of lives in her short 13 months on Earth. I am so proud and honored to be her mama.
Gus was diagnosed with stage IV neuroblastoma in June 2019. He went through 18 months of standard therapy.
He unfortunately relapsed on his end of treatment scans in January 2021. We’ve been searching for Gus’ cure ever since - he’s done trials in multiple states and continues to fight hard.
Gus has had almost every therapy out there for childhood cancer - chemotherapy, immunotherapy, surgery, radiation, internal radiation, CAR-T cell therapy, stem cell transplants, and medication.
Despite never having a break in treatment he’s still doing amazing and continues to be the brightest light.
Brooks was Diagnosed with Rhabdomyosarcoma of the prostate and Bladder at just 11 days old.
He started Chemo at 14 days old. At his first set of scans, his tumor was not shrinking the way we would have liked.
Being that Rhabdomyosarcoma is so aggressive, it was best to remove the entire tumor along with his bladder and prostate.
Brooks will finish his last big chemo on August 10th, have scans after and then start maintenance on August 31st for 6 months.
Brooks is a blessing from God and he is the happiest baby!
4-month-old Baby Amelia had been irritable, vomiting and had trouble lifting her eyes. Serina, Amelia's mommy, took her to the ER. There, they measured her head and it appeared too large for her age.
She was then taken for a CT Scan that showed a 6cm mass in her brain. After undergoing surgery to alleviate pressure in her head, a neurosurgeon performed surgery to remove about 95% of the tumor. It was then confirmed Amelia had brain cancer - ETMR.
Amelia bravely endured 4 cycles of chemotherapy and a second brain surgery, 4 months after the first one. The prognosis was grim and doctors refused to start radiation therapy before Amelia turned 1. She then began high dose chemotherapy.
Soon after, an MRI showed that treatment wasn't working to contain the cancer. Amelia was given days to live.
Amelia grew her wings at 15 months old, 11 months after diagnosis.
We went in on 3-19-2020 for a dr. visit because he had been leaning to the side when he walked. We thought it was just an earache since we had just gotten home from traveling. The dr. didn’t find anything wrong and suggested he go to a Neurologist.
Unfortunately it was right when COVID was shutting everything down and she said it may be a month before we can get in. Hours later she called and said a neurologist had an opening for tomorrow and suggested we go. So we did.
At the app he said Ethan would need an MRI. The MRI came back showing a 4cm tumor in the middle of his brain. They wanted to operate the next morning as they said he would not be here in 2 weeks if we didn’t do the surgery. The surgery went well and the dr. said they got it all!
After some recovery time they wanted to start chemo. During that time the results of the biopsy came back that it was ETMR and diagnosed him as terminal.
He passed away a little under 11 weeks from when we found out! 😭😭😭
Linc was diagnosed with ETMR 1/4/21 after vomiting in the morning for about a month …
GTR of tumor was achieved linc had 2 intro chemo rounds followed by 3 bone marrow transplants unfortunately after his 3rd transplant plant he developed a rare but serious side effect of to much chemo called VOD which is liver damage linc spent an extra 4 weeks after transplant fighting VOD and has just passed his one year mark from when he rang the bell and got to walk out of there !
Once out of treatment he went on to complete 6 weeks of photon radiation and is almost done with maintenance chemo he finishes round 10 out of 12 this Wednesday most recent scans in June has remained clean marking 1 1/2 years NED #Lincstrong
Adan was a straggler, an absolutely wishful child. I had 2 unwanted pregnancies and miscarriages before him. Then he came. I have a daughter 19, a son 16, Adan died shortly before he was 4 years old, and daughter 10 months, I love all my children the same, you can't tell apart, but somehow the love for him is very intense and special, and today even when I have the strength I look at his photos and it warms my heart and wonderful unbelievable feelings touch me. The diagnosis of brain tumor (ETMR) came in February 2018 after Adan seemed somehow different for the whole month of January. I was dead inside at that moment when I broke down crying. In August we were told that there was no longer any treatment option and that Adan would not survive the disease. It was probably the darkest hour, the worst blow in my life so far. What my mom's heart felt all along suddenly became a reality. To this day I don't know how we managed to go back to Adan's room, just keep functioning, pray and hope, wait to see what happens. On the evening of February 20, 2019, my little, big, strong Adan fell asleep forever in peace and quiet. In Papa's arms. I didn't want to go on living then. Not that I really thought about how I wanted to end my life, just the pain was just so great that I couldn't imagine going on with it. I thought it could only break you. Every day I wished I wouldn't wake up the next. It was a desire for redemption. Today I don't remember where I got the strength myself. The time after my son's death, I was hardly myself, it just worked. Then came the big slump. Nothing more to do, no more to regulate. There was no one left who needed us, except for my two big children who had been on their own for the last year and mastered everything on their own, the apartment was so quiet, so empty. It was so unbearable. Many recommended that I get pregnant again right away so that I could get another job. I was very pissed off at those, you can't just replace your dead child with a new one. There are good days and there are not so good days; everyone feels the consequences differently. I often sit in front of my cell phone for evenings, looking at pictures and videos, because I'm afraid of forgetting and I miss Adan so much. The missing and the sadness of the loss never gets less.
Mason was diagnosed with Stage IV High Risk Neuroblastoma just 4 days after he turned 5 years old.
So far he has gone though 10 rounds of chemo, 7 rounds of immunotherapy, 12 rounds of radiation and 2 stem cell transplants.
In June 2021 Madison complained of stomach aches. One night getting some food she said her stomach hurt so bad she couldn’t eat (it was her favorite meal, so it concerned us). She was super pale and fell asleep. A few days later we met with her primary care doctor and she felt her stomach, listened to her stomach etc. The doctor said her stomach was a little distended but all her bowels etc sounded fine so we should eliminate dairy from her diet. We eliminated as much dairy as Madison would do (couldn’t give up cheese, refused to) and she still had tummy aches. Few days passed and she didn’t complain of stomach aches even after eating dairy. We went about daily life as normal. In August 2021 (August 2nd to be exact) as Russell and Myself were getting the kids ready for bed I noticed Madison’s tummy was sticking out a lot more than normal. As I asked her to let me see her tummy I noticed a large hard lump on the lower left abdomen. The next day we immediately got her into a doctor to see someone. They did an ultrasound and upon further investigation decided they needed a CT of her abdomen. After her CT we got the most devastating news a parent could get, we knew it was bad when the nurse delivering the news was teary eyed. Not only did they confirm there was a mass in her stomach, they confirmed there was also a nodule on her lung. We got sent home to await further instructions. We couldn’t get into the hospital in Wichita so Patterson Health Center called Children’s Mercy in Kansas City. At 5:00 we were told they wanted us to be there tonight. After saying very quick goodbyes to Natalie and Blaine and scrambling to pack we headed out around 5:45. We made it to Children’s Mercy around 9:15 and were told that the next day we would meet with a team around Noon. We met with the team and determined she would need another CT and a biopsy. After her CT it was confirmed an additional 2 nodules were on her lungs. The next day she was scheduled to get her biopsy and a port put in. After speaking with the large tumor doctor he informed us that it was very rare that something that large would be benign especially since there were more spots on her lungs. After Madison got her port put in we were allowed to go home until results of the biopsy came in. Which brings us to where we are today, waiting on an official diagnosis and game plan of how to treat Madison’s mass and nodules. Madison was diagnosed with Stage 4 Rhabdomyosarcoma
Ben started having seizures when he was 15 months old. MRI discovered a tumor. First operation was at 17 months old to remove 90% of the tumor. Pathology misdiagnosed him with a deformity. 5 years later 4 years later Ben woke up having right side weakness.
We took him to Duke Hospital and they discovered a tumor (same location) and a cyst pressing on his brain stem, which was causing the right side weakness. Ben had his 2nd surgery to remove 90% of the tumor.
Doctors also requested pathology from the other hospital from the 1st surgery in Indiana. Duke doctors and St. Jude doctors did trust the 1st path. Was incorrect. The 2nd pathology had the symptoms pathology diagnosed Ben with a grade 1 Astrocytoma diffused in his brain stem.
During the 2nd surgery Ben had a stroke which left him with right side paralysis. We went completely vegan to help fight the tumor growth.
Changing up our diet helped stop the tumor growth, but the cyst was still growing.
So we had to start chemo. 2nd surgery was March 2022
Sarah was diagnosed at age five with Ewing sarcoma.
She fought this bone cancer for another five years, enduring chemo, radiation and a total leg amputation.
She was the youngest of our three daughters and was spoiled by everyone around her.
Madi Cate was diagnosed with JMML (juvenile myelomonocytic leukemia), in February 2019 at the age of 6.
Due to complications with her lungs she passed away March 13, 2019
Karson was an average 9 year old boy who loved video games, swimming, bring loud, and sneaking as much candy as possible. Summer 2021 Karson decided to try his hand in football. He often complained the helmet hurt his head but he tried. Karson’s headaches became increasingly worse. He also started eating less and less. What he did eat wasn’t staying down. Karson has always been an anxious child and all signs seemed to be just nerves as he geared up to start his 4th grade year in school. While at a Football Jamboree Karson just wasn’t acting himself. When he took a nap in the middle of August on a hot bleacher, we knew something was off. Thinking he was dehydrated we made an appointment for Monday to get fluids. By the time we arrived Karson was screaming in agonizing pain and his limbs were locked up like a charley horse. After a large bag of fluids, Karson was able to settle and take a nap. Still not having a good feeling, I swung by the house, grabbed a phone charger and Karson a pair of pajama pants and headed to Arkansas Children’s hospital. On the day, August 23, 2021, I disagreed with the ER physician assumption of dehydration and requested a CT scan to rule out meningitis. That we did. The doctors appeared. Shut the door and while Karson slept, they told me a large mass has been picked up on the CT scan and it’s more than like brain cancer. After a confirmation biopsy, Karson was diagnosed with Type 4, Metastatic Medulloblastoma. The survival rates for this type of cancer are highly unfavorable but we chose to focus on giving it all we can!
About 2 weeks before Gavin's 2nd birthday we had noticed his right eye was turning in, but it was so subtle. At his 2 year Well Child Check we mentioned it to his pediatrician. She stated that this is common with this age group and usually corrects itself, but just in case she was referring us to an ophthalmologist. Two weeks later we met with the ophthalmologist who diagnosed him with Sixth Nerve Palsy of the Left Eye. Since we couldn't see any clear cause, she ordered a MRI "just to rule things out". Two weeks later Gavin went in for a MRI under anesthesia. That is when our lives changed forever. Just a month after his 2nd Birthday, Gavin was diagnosed with DIPG while we were waiting for him to wake up, a Neuro-Oncologist (Nicholas Vitanza) and Neurosurgery ARNP (Casey Henson) came in to deliver the news. That night he underwent a biopsy to see what mutations this tumor had and to confirm DIPG diagnosis. A week later he started 30 rounds of radiation under anesthesia. His tumor shrank and his Sixth Nerve Palsy resolved. After that he did "maintenance therapy" of 3 different types of chemotherapy until he was enrolled in a CAR-T Cell Clinical Trial at Seattle Children's in September 2021. At the time Gavin was the youngest DIPG patient on the trial, the first to receive an increased dose of CAR-T Cells and the first DIPG patient to enroll who wasn't already in progression. He has been going strong on the CAR-T Cell Trial and his tumor has remained stable. Earlier this year his doctor said that his Pons is of normal size and remains the smallest DIPG he has seen. Gavin is to start Course 12 of the clinical trial on August 3rd 2022 and is the first DIPG patient to start Course 12. He remains symptom free of DIPG.
On June 4th, 2021, just as the clock struck midnight, Nova was born, our princess, our beautiful Cinderella! I knew in that moment, she was going to be special. Nova touches the lives of everyone around her with her precious smile and infectious laugh everyday.
On March 22nd, 2022, our then 9 month old Nova was diagnosed with High Risk Stage 4 Neuroblastoma cancer. Despite her diagnosis, she wakes up every morning with a huge smile, followed by some energetic dancing and clapping, ready to take on the day.
The doctors and nurses at the hospital make it their duty to stop by Nova’s room to see her infectious smile, it reassures them how strong and resilient such a little one can be as they fight to beat something big like cancer.
Her joyous spirit motivates us each day and we know that through this, Nova will continue to touch the lives of many and be a sign of hope for families of children diagnosed with childhood cancer.
Veronica was diagnosed with B cell Acute Lymphoblastic Leukemia in February of this year. She has impressed us so much with her strength during treatment. Especially when one of her chemotherapy meds gave her a stroke. She is definitely our hero!!
Jonah Finn Amor was a beautiful, strong, and happy little man. He came into this world in June of 2016 with a fully formed mohawk. During his first year of life, Jonah developed a deep love for music, his mommies, his big sister, and all his people, including Elmo and friends. He became famous for his hair and his dancing skills. In between dance parties, he loved to walk his doggy, play ball, make phone calls, suck his binky, eat pancakes with syrup, and drink “ilk.” By his second year of life, he was learning how to do pull ups and push-ups, hula hoop, ride trikes and scooters, karaoke, show good manners, and speak Portuguese. One morning, two months before his second birthday, Jonah suffered a prolonged seizure and partial paralysis. He was rushed to Boston Children’s Hospital, where an MRI revealed a brain tumor in his right parietal lobe. The tumor was completely resected, and cerebral spinal fluid showed no evidence of disease spread. However, pathology revealed an Embryonal Tumor with Multilayered Rosettes (ETMR), an extremely rare tumor with a very dismal prognosis, even after gross total resection. The diagnosis devastated his people, with limited and debilitating treatment options being all that are currently available. Jonah began his treatment in May of 2018 at Boston Children’s Hospital and Dana Farber Cancer Institute. The goal of this treatment was to save Jonah’s life by removing disease and preventing further spread. Short of that, the aim was to prolong his happy life for as long as possible, with the haunting knowledge that the median survival after the diagnosis of ETMR is less than one year, and intense surgical resections, chemotherapy and radiation potentially introduce serious adverse effects, some with consequential lifetime challenges. After recovering from the surgical resection of his tumor, Jonah had surgeries to insert a central venous catheter for intravenous delivery, an Ommaya reservoir for intracerebral ventricular delivery, and a G-tube for feeding. He then endured 4 cycles of rigorous treatment with 7 chemotherapeutics over 4 months. During these months, Jonah became very sick from the treatments and spent most of his days and nights in the hospital, requiring many blood transfusions, copious pain management, and antibiotics. During month 4, MRI revealed that he had suffered local recurrence of disease. After a second surgical resection in September of 2018, Jonah recovered his strength and returned home. Two weeks later, he began proton radiation at Massachusetts General Hospital, which involved anesthetized treatment every day for 6 weeks. During and post radiation, Jonah was treated with experimental drugs, based on emerging preclinical research and clinical data. The extensive chemotherapy left Jonah with a hearing deficit. Two months after completion of radiation, and while on experimental therapies, Jonah suffered a second local recurrence of disease. He underwent a third craniotomy with complete tumor resection in March of 2019, followed by more radiation and chemotherapy. In July of 2019, a new and distal brain tumor was detected by MRI and Jonah began 6 weeks of whole brain and spine radiation therapy, with concomitant chemotherapy followed by many months of chemotherapies, steroids, physical, occupational, and speech therapy. By July of 2020, the new tumor had progressed to the point of severely compromising Jonah's ability to stand or walk. Jonah then underwent three craniotomies with sub-total tumor resections in August and November of 2020, and January of 2021. Throughout these months, Jonah was also treated with intensive radiation therapy, various experimental targeted and chemotherapies, and steroids. In March of 2021, a CT scan revealed that Jonah’s disease had spread to his chest and lungs. He underwent surgical resection of lung tumors for biopsy and confirmation of ETMR. After recovery from surgery, Jonah continued his daily treatments with several different experimental medicines, and therapies, as strength allowed. Slowly, he lost motor and respiratory functions, with his sweet soul departing his body on November 26, 2021, in the arms of his mommies and his sister. Jonah's fighting spirit was incredibly strong, and he absolutely adored his life and his people. His smiles, laughter, and sweet voice lit up the world around him. During his last year of life, cells from Jonah's tumor resections were successfully cultured in an established line which is used in research laboratories throughout the world, in search of new treatments for ETMR. This is one of Jonah’s many gifts to humankind. Jonah’s people continue to fight ETMR in his honor, tirelessly searching for new ideas for treatments and connecting with research scientists and clinicians that are pursuing targeted drugs and combinations for this devastating cancer.
In the beginning........ Some may not know how this began, so I thought I'd share again. This is a question we are asked often.... Well, a few weeks ago we noticed Tyler at dinner time, he looked really tired and his skin tone would be pale. We just chalked it up as he had a rough day/week at school. We then noticed he would be really tired after sleeping 8 to 10 hours when we woke him for school. He got to where he would just lye around until time to go to school. He would not eat, he was exhausted. Even though we asked if he was okay or wanted to eat, he would always say he was not hungry. After a couple of days or so, Tyler told me that he had been going to the water fountain at school in the mornings, to keep from throwing up. The next week, Monday at school he fell on the playground and hit his head on the ground that left a bump and a visit to the nurses office at school. That same week we beleive it was 3 to 4 times he was in the nurses office, very unusual for Tyler. We thought he was having trouble with bullying or schoolwork, because it was so unusual behaviour for Ty. That same week, Thursday I kept him out of school and took him to pediatric clinic to make sure no concussion or major head injury. He went thru the motions of the physical and passed all physical aspects. Doctor said possible mild concussion could not be ruled out, but he was good to go and a healthy young boy. That following Monday we send Ty off to school, despite him saying he did not want to go to school. We have to go to work and he has to attend school. I receive that call from our school nurse. She tells me Tyler has now thrown up at school and his color appears to look a bit jaundice. Our principal was called in as well and she agreed. I immediately went to get Tyler to take him to the pediatric clinic for some blood work. On Tuesday I kept Tyler home because he did not hold down his breakfast and was still lying around, and thought it was best until we had some bloodwork answers. At around 9:35a.m. that morning I received the call from the clinic that Tyler had some abnormal blood cells that were showing up as leukemia and that all paperwork has been sent to Arkansas Children's Hospital and we needed to head that way with Tyler to the ER, where a staff of doctors and specialists would be waiting to see and starting treating Ty.... So, this pretty much happened overnight. Tyler lost his battle against this demon on 11/13/2021, forever in our hearts.
Caroline was born with an anorectal malformation, she started seeing a surgeon in North Carolina (as that is where we were stationed at the time). Her surgeon told us it was “mild” and would only require at home daily medial care for a year. Due to my husband having been diagnosed with testicular cancer the year prior, he was getting medically discharged from the USMC and my daughters care was transferred to Primary Childrens Hospital. At Caroline’s first appointment with her new doctor it only took him minutes to say “this is more serious and will require a large surgery (an entire rectal reconstruction). In order to make a treatment plan for the malformation, extensive testing was conducted and through that testing it was discovered that Caroline had a cancer-ous tumor on her right adrenal gland/kidney (intermittent risk neuroblastoma) as well as a tethered spinal cord. Caroline had a tumor biopsy, bone marrow biopsy, port placement and started her first round of chemo at 6 months old. Caroline endured chemo, multiple surgeries, terrible infections and so many other medical treatments for 6 months. The week after her 1st birthday we were told she no longer needs chemotherapy but due to the tumor encasing her aorta, IVC, and many other important arteries and veins that tumor removal is not an option. She will require lifelong follow up for this. Caroline has had her spinal surgery and gets closer to walking everyday! She still has a very big and hard surgery ahead of her for her anorectal malformation but we know just like everything else, she will smile through it!
ETMR diagnosed with six month old in Jan 2019, 70-80% removed 3 rounds induction chemo 2 rounds high dosis chemo with stem cell rescue
Weekly maintenance chemo since Sep 2019 MRI every third month Rest-tumor and metastases still stable
Viviann was born at 31 wk 6 days after my water broke at 20 wks. She has been diagnosed with spastic quadriplegic cerebral palsy epilepsy CLD and a Brain Tumor. She is the baby of 5 and the absolute light of our lives.
Adley was diagnosed with Acute Lymphoblastic Leukemia just 2 weeks before her 2nd birthday.
She is currently in delayed intensification and having a rough time.
She loves animals (mostly puppies), dancing, moana, and sing 2.
She loves her older brother Mayze and really enjoys swimming and riding ATV.
Kyla is 2 years old and was diagnosed with B-cell ALL on June 10th 2022. Kyla is such a sweet, sassy, free spirited little girl.
She loves to play chef and run around outside.
She is definitely a fighter.
I pray everyday my baby girl will make it through this.
Our daughter Amelia (2.5) was diagnosed with an ETMR tumor back in mid-October. It was a total shock to us as her symptoms came on suddenly, within 24hrs.
One day she just wasn't feeling herself, and the next morning we could barely get her to respond and rushed her to the emergency room. Just four days before she had had a perfect 2.5 year check-up... no idication of any disease, much less a TUMOR.
Couldn't have been further from my mind. When we came in, the ER Doctors didn't know what was wrong with her... then her pupil blew and they knew it was neurological. They did a a CT scan and found a baseball size tumor on her left posterior fossa.
She was life-flighted to Texas Children's where they did an emergency craniotomy to ease the pressure and the next day another surgery to remove the tumor (GTR).
She has completed ACNS0334 treatment protocol for chemo therapy and in between induction and consolidation had another brain surgery to remove residual tumor.
She is now on 12 months of maintenance chemo as long as things remain stable.
At 1 year old Alex came down with pneumonia that led to finding he was in kidney failure. We got to Arkansas Childrens’s Hospital to find out he only had 1 kidney and a blockage in his urethra.
Instant dialysis to get his numbers down. They repaired a hernia, the brought down his testicles, they made a vesticostomy (a hole for his urine to empty) and feeding tube during that time. Always in and out of the hospital over the years.
They removed his colon, he has avascular necrosis of his hip, bone disease, and intestinal failure. Before his kidney transplant in 2019 they removed his only kidney and he could only drink 1-Click of water a day. It was a rough time.
Then in 2020 he received his new kidney from a deceased 22 year old. And it’s been working great. He’s been in the hospital over lots of belly/intestinal issues. Lots!!!
This time they did a kidney biopsy and found he has PTLD Cancer. We are at a loss and completely devastated that now he has to fight even harder.
Kinsey was diagnosed on 9/1/21 with a brain tumor. She was 3 years old. She was misdiagnosed as DIPG at MUSC in Charleston, SC. We went to St. Jude, they determined it was not DIPG and did 100% resection.
Two weeks after her resection, she had a regrowth in the original cavity and two tumors forming on her spine. She then received 30 treatments of photon radiation. 10 focal treatments on her original tumor site proceeded by 20 full cranial/spine treatments.
Two weeks after radiation, the two in her spine were completely gone and the regrowth in her original site shrunk from 4x15mm to 4x4mm. She then completed two rounds of Vincristine, Cyclophosphamide, and Cisplatin. After these two rounds her regrowth had shrunk to 1mm. (10 weeks post radiation).
She then completed two more rounds of Topotecan and Cychlophosphamide (less than half the original dose of cychlo).
Her tumor is now completely gone and she is NED.
My sweet Jarrett Chord started complaining of a headache, and a week later was diagnosed with cancer.
It had already spread to the spine & meninges by the time he started having symptoms.
He was such a beautiful, happy, and perfect little boy.
He is known for his love of trains. 💙
Everleigh was diagnosed at 6 months old on February 25th 2021 with Infant B Mixed Phenotype Acute Leukemia. We immediately started induction, after induction she was not yet in remission so we did another round of intense treatment targeting the AML. After that we began the transplant process. On June 9th 2021 Everleigh had a 12/12 matched bone marrow transplant with donor cells. The prep regimen caused Everleigh to have severe VOD (Veno Occlusive Disease) and TA-TMA (Transplant Associated Thrombotic Microangiopathy). This led to 31 days intubated in the PICU and on dialysis. A few months later Everleigh had made almost a full recovery, unfortunately on Day +99 we found out she had relapsed. Because of her little body and organs still being so tired from transplant we had limited options for treatment . Over the course of the rest of the year we had many trials and errors. We tried oral chemos, shots, iv. We eventually got to a point where we had no control over the leukemia. In February her primary doctor gave us hospice papers and said she was withdrawing care, to us that was not acceptable. Everleigh was thriving at the time. She never looked or acted sick. She was happy and “healthy”. Her doctor did say she would refer us for a clinical trial and that would be our only option left. We waited impatiently for weeks to hear about the trial due to insurance issues. At the end of February we suddenly received a call that they were ready to meet our precious girl. We had less than 24 hours to drive from Georgia to New York City. It’s a 14 hour drive for us straight through, let alone packing and prepping medical supplies, and all the stops on the way with an 18 month old. We made it, and had such high hopes for the new SNDX trial. After starting it things were going well! It was working AMAZING!! Unfortunately it was working “too well”. This led Everleigh to be in the PICU again and intubated before we knew it. 5 days after intubation Everleigh’s body was tired and we no longer could support her medically. On April 9th she went to heaven. Everleigh was a true fighter. Every time someone thought she would be knocked down she proved them wrong! Throughout her journey she taught many doctors! I am forever grateful that god chose me to be her momma. We spent half of her life in the hospital. She was poked and prodded for even more days too. These poor kids deserve more.
The day after his 5th birthday (8/31/21) Ryan was diagnosed with High risk AML with genetic mutation T(6;9) dek nup 214.
He underwent 3 chemotherapy inductions and had a BMT January 14,2022.
At 18 months, Kimber was delayed in both speech and motor development so I asked for help. After months of therapy, one therapist began to notice right side weakness in her hand and shoulder. We watched it and in about 2 weeks she started to drag her right leg as well. We took her to the ER that night and they did a CT scan and an xray. They sent us home with the assurance there were no tumors or brain bleed but told us to see a neurologist. Thankfully the next day, our sister in law showed a dr a video of Kimber dragging her leg and the dr admitted us without being seen. We immediately drove 2.5 hours there. On the way there she started to even drool on the right side. They did their own CT scan and found Kimber had a brainstem tumor. The prognosis we recieved from their neurosurgeon was that she would go to sleep one day and not wake up. That this was an inoperable tumor and there was nothing they could do. We didn't accept that. Kimber later was transferred to Texas Children and the next day which was Sunday, May 30th, 2021 she had her first surgery where they completed only partial resection due to a mucus plugging her intubation tube. Three days later, Kimber had her second surgery where they were able to remove 95% of the tumor. The surgeons were very optimistic and we later found out the tumor is a pilocytic astrocytoma. Kimber stayed in the hospital for rehab where she had to relearn everything -even picking her head up was a challenge. But three weeks after the surgeries, she began spiking fevers and had another MRI which showed the tumor was growing. On 7/9 she started an 80 week chemotherapy plan. We also found out later, she has a very rare genetic syndrome called Koolen De Vries. This only adds to our difficulties as we aren't sure if her syndrome causes her developmental delays or the brain tumor. Kimber is estimated to complete chemo in Feb 2023. Her tumor won't ever go away but we can pray it will stay stable.
Kai was having occasional stomach pains since April 2022.
The week before school began in early August we noticed the area was becoming hard to the touch.
We went to his doctor who ordered an ultrasound. During ultrasound they found a large kidney mass called Wilms tumor.
He had surgery removing the tumor and his kidney on August 22.
We are just beginning our journey through this.
He will begin chemotherapy and radiation in the next couple of weeks.
In late April of 2021, just before Sutton turned 3, he started to experience some balance issues. We took him to the ER, and they proceeded to do an MRI. The doctors found a tumor in Sutton’s brain stem. Initially we were told Sutton had DIPG, and he was given 9-12 months.
A wonderful doctor at Toledo hospital recommended we get a second opinion at Mott Children’s Hospital at the University of Michigan. The doctors there decided to do a biopsy of his tumor, and they found that it was ETMR. Sutton completed 6 weeks of radiation, 4 rounds of chemotherapy, and three stem cell transplants. He’s currently receiving a clinical trial drug (DFMO) as well as maintenance chemo three times a month through his ommaya.
His tumor is still present (as it can’t be surgically removed), but it has shrunk. Sutton now has to wear hearing aides as his hearing has been permanently damaged due to the chemo and he wears orthotics.
He’s a strong, hysterical, and loving 4 year old.
He is obsessed with trains, Peppa Pig, trucks, and sharks.
Our beautiful Samantha Briana Andrews was diagnosed with Acute Myeloid Leukemia (AML) on Friday, September 10, 2021. It was a day that shook our entire family and a day none of us will forget. However, with tragedy, comes great blessings, growth, and miracles. Our first miracle happened within the first couple of hours of being in the hospital. Samantha's Aunt Briana passed of Colon Cancer. Samantha's Aunt April called the Arkansas Children's Hospital (ACH) Gift Shop and asked them to put together a present full of things for Sam, and only said "include a doll". They delivered her present to our ER room and the very first item on top was a doll named "Brianna". (April did not even know the doll had a name) Immediately Samantha said "Aunt Briana is here with us". We knew from day one, that the Lord would watch over and protect our little girl and that Aunt Briana was going to be there with us, every step of the way. There wasn't a time, that we doubted the Lord and his trial for Samantha. Yes, it shook us, and we never want to go through anything like that ever again. However, our family has grown in so many ways and are so blessed to have been touched by so many and to also touch so many other people's lives. With AML, Samantha had to stay in the hospital for 7-9 days for chemotherapy treatment, and then she would be released, go home, spike a fever, and return to the hospital where she had to stay for about a month each round, until her Immune System built up from Zero, so she could leave the hospital. Never once, has our girl complained. Not once. She had a CVL hanging from the middle of her chest, down to her groin area, she was sick, she gained 10+ lbs. of fluid during round two and had difficulty lifting her legs because they were so heavy, she was unrecognizable because her face was so swollen, she had kidney issues, she was lonely, couldn't be with her friends, couldn't leave the floor unless it was the weekend, couldn't see her brother whom she loves very much, etc. She experienced everything that all other cancer patients experience, but she thankfully never had physical pain and that is a HUGE blessing in and of itself. We know that and are so thankful. Samantha went into REMISSION after her very first round of chemo! She had a total of 5 rounds because her AML was considered "Low Level 2". We were blessed that only her first two rounds made her extremely sick. She was on a Clinical Trial for those rounds. Rounds 3-5 she did the "Standard" treatments and her body didn't have a hard time at all. She was a happy and for the most part, healthy girl up on the Hematology-Oncology floor. Samantha was happiest visiting other patients, playing games, doing art, or walking around. Therefore, we were constantly out meeting new patients, so that she had someone to be with. We met a lot of friends because with her stays being so long and everyone else's being short, we got to meet people often...We've made life long friends! Samantha finished her last round and is having her "End of Treatment Celebration" at ACH Tuesday, September 6th! She is the strongest kid I have ever met! Her brother, Heston is enjoying having her home and having someone to play with all the time. He too has grown, as it is not just the cancer patient who goes through cancer, but the entire family. We are beyond blessed that she is cancer free and pray every day that she will never get cancer again and that our friends will get healthy and whole. God is Good and we are thankful for his blessings.
He has Osteosarcoma Bone Cancer, had an amputation, and gas Right Atrial Thrumbus in his heart.
Ella was diagnosed with Atypical teratoid rhabdoid tumor (ATRT) this is a rare, aggressive tumors of the central nervous system. They occur primarily in the cerebellum (the part of the brain that controls movement and balance) and the brain stem (the part of the brain that controls basic body functions) Ellas was located in the part that controls movement and balance.
At 9 months old she started to get really sick. Vomiting, lose of balance and what looked like to be Torticollis but was actually the tumor getting so big that it was pushing her head to the side. On 02/26/2020 she had emergency surgery to remove the tumor due to the night before she had a 7min seizure and had to be intubated and was not going to wake back up unless surgery was performed.
Two weeks later she had a another surgery to put a shunt in due to fluid buildup in her drain and got all stitches redone because they were opening up from the pressure the fluid was causing. A month after the shunt was out Ella started the first of 5 rounds of chemotherapy treatments.
She had multiple small procedures in between treatments and 3 line infections that almost landed her in the PICU.
Asher was diagnosed at 3.5 with Ewing's Sarcoma, the second most prevalent form of bone cancer among kids. She was treated with standard chemo and radiation for the first 4 years of her fight.
When standard options ran out she was admitted as the very first patient into the newly established innovative Therapeutics Program at Arkansas Children's Hospital. She would fight in this program for almost another 2 years.
Asher passed away on January 7, 2018.
In 2019, her parents along with a handful of extraordinary other family and friends formed the Brooklyn Project Foundation 501(c)3 to raise funds and awareness for childhood cancer research through the Innovative Therapeutics Program at Arkansas Children's Hospital.
They have give $242,000 to that program as of Dec 2021.
Age 7 diagnosed stage 1 intermediate risk alveolar Rhabdomyosarcoma fox-01+.
Mae did 43 weeks of chemo and 6 weeks of proton radiation.
She’s 6 months off treatment with 2 sets of good scans!
Olivia was diagnosed in March of 2021, at the age of 10, with Undifferentiated Sarcoma.
After months of visits to her pediatrician and being told it was nothing; the right side of her face swelled up overnight. A trip to the ER and a CT scan confirmed a fear I didn’t know existed.
She had a very large mass that surrounded her carotid artery and was pressing on numerous nerves which were causing her jaw pain, headaches, and Horner’s Syndrome.
We were blindsided. Cancer wasn’t even on our minds.
Everything after that point was a blur. From an MRI to biopsy to an oncologist walking in her room to scheduling PET scans and port placement, it all moved at lightning speed.
McKinely was diagnosed at 5 months with Primitive Myxoid Mesenchymal Tumor of Infancy or PMMTI, an extremely rare cancer that only has about 20-30 cases in the world.
Her tumor is/was behind her left eye and wrapped around her optical nerve so her eye was bulging out.
She did 6 rounds of high dose chemo and 36 rounds of proton radiation.
Because of the location of the tumor, surgery was our last resort because they would have to remover her eye but we thankfully never got to that point.
She still has part of a tumor yet it’s considered dead tissue now and she’s 2 years in remission come Oct.
My name is Tess. I am currently 18 years old and a William Penn student athlete. My mom and dad divorced at the age of two. I had leukemia at the age of five. My dad remarried when I was about 8. Then shortly after that they had my little brother TJ who will be 9 on the 12th of september. I have an older sister who is now 20. I went through chemotherapy for about two years. I am currently 10 years in remission. My dad's wife was very abusive so I moved in with my grandma at the age of 15. I went to Andover high my freshman and sophomore year. Then I transferred to Washburn Rural High School for my junior and senior year. My junior year I met my boyfriend(Jonah). We've been together since. He suggested I try out for the girls wrestling team. So I did. And I fell in love with the sport. Yes it's a lot of hard work and painful, but it's so much fun. I graduated from Washburn Rual and got recruited and got a wrestling scholarship of $14,500. I of course accepted the offer and I am currently a student athlete at William Penn University. My boyfriend took me with his family to Hawaii this summer. His family loves me and I love them. His fathers side of the family are Hawainn and live in Hawaii. After we graduate college Jonah and I are planning to settle down in Hawaii. I am studying elementary education and soon will be studying photography. My boyfriend is studying law. I'm hoping to do photography and I am hoping to get my teaching license for Hawaii. If I get my teaching license then I can teach there. This is my story.